“I became a caregiver for the first time in 2006 when my father suffered his first of three massive strokes. That was my first taste of it and my mom worked while he recovered. Fast forward to 2013 and I became the full-time caregiver for my mother who was diagnosed with a rare form of Dementia called Frontotemporal Dementia.
While there are some aspects that are similar to Alzheimer’s, it’s different because it affects younger patients, primarily those under 65. She was 57 when she was diagnosed but began exhibiting symptoms before that…We just didn’t know.
At the time she was diagnosed, I was working in the medical field. My father was also working full-time but it became more and more apparent that she was not able to stay at home by herself. My income was nowhere near my father’s, so I became a full-time caregiver.
It’s definitely been an experience. My friends are living the “ideal millennial life.” They live in “live, work, play” communities and work for startups doing great activism work. I started to realize 6 months to a year in, that that was not going to be my reality and I had to come to terms with it.
A diagnosis of Dementia can really put a kink in our generation’s plans. It’s how to reframe your mindset to protect your own self-care and not just fall into depression. Initially, when we were going through the diagnosis process and trying to explain things to friends and my work colleagues, I’m sure I was acting in ways that were uncharacteristic to myself. There’s nothing you can tell them to relate them to a situation you’re going through, which made it really frustrating. I burned a lot of bridges with friendships I wasn’t able to salvage and I gave myself a really hard time about it.
I tried to find communities to fit my new normal. Finding someone who was also a caregiver, specifically for someone with Dementia, was challenging. Millennials get this bad rap for being a self-serving and vapid generation but there are so many people who are sacrificing and selfless.
I know my parents felt terrible; they didn’t envision this for my life. They sent me off to college and hoped that I would go on to get my Ph.D. and do all these amazing things. For me, I’m more than happy to serve them. I just wish I had more support in other ways.
Eventually, this will be over and the last thing my mom would want is for me to not be okay. So it’s like, what am I going to do to be okay? How am I going to enjoy life? I had to redefine what enjoyment and life looks like for me for the time being and being comfortable with that. It made such a huge difference and it doesn’t mean I don’t have bad days or it isn’t hard but it’s more bearable. For me, writing is a huge outlet and so that’s something I focus on.
Turning Circumstance Into A Career
It’s been about four years now that I’ve been my mother’s full-time caregiver. Over the course of that, I’ve written and blogged leading me to a conference called BlogHer, the number one content creation conference for women. It was kismet because they had a breakout session about caregiving which seemed really random to me. This is a conference about blogging and social media, why are we talking about caregiving? But it was an amazing experience and I found a community there.
I was able to get in touch with representatives from AARP and authors who had written about their experiences. They talked a lot about this “sandwich generation” that we’re encountering. Millennials are starting their own families but are also taking care of their parents in the Baby Boomer generation. Needless to say, they’re getting overwhelmed trying to manage two families and two households.
If you’re in a position like I am, realistically it’s very difficult to get a full-time job. For a lot of people, caregiving is full-time. Paying for someone to come in and care for your loved one or sending them to a nursing home, retirement community, or assisted living is obscenely expensive.
Over the next 10 years, over 7 million people will suffer from dementia. By the year 2050, nearly double. America isn’t ready for this epidemic. You can’t make this disease sexy; you can’t put a spin on it. Patients are robbed of themselves every day. You see this person that you love and know and recognize, completely change and alter from who they once were. In this country, we can pick and choose who deserves our sympathy and I think we have a difficult time wrapping our minds around a helpless adult.
So after the conference, I thought, ‘What can I do?’ I have this unique story and voice, I want to do something with it and I want to help people. I came up with the idea of an online community – hopefully one day an app – called Our Turn 2 Care. The mission is to inform and create a community for Millennial caregivers, particularly those of parents who have been diagnosed with Dementia. I want to raise awareness but also simplify a piece of someone’s life. It can be extremely hard to navigate this disease and what it takes to be a caregiver. I want it to be a combination of awareness while also equipping young people with tangible information, rather than saying, “here’s a random website, figure it out.”
I want to shine a light on challenges specific to people of color and members of the LGBTQ community. I want to shape the site based on what people need. Feel free to visit AishaAdkins.com and Our Turn 2 Care to learn more.”
This story is told by Aisha Adkins during an interview with Gather Good. Aisha is the founder of Our Turn 2 Care, a platform to inform, equip, and connect millennial caregivers with resources and each other.
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